Context : Palliative care involves global management of the patient at the end of life. In the practice of oncology, important cultural aspects of this care are not always adequately taken in account.

Objective: To describe social, familial, economic and cultural aspects of end of life care through a case report of a patient with cancer of the cervix living in a multicultural setting.

Data Acquisition: Mrs. X, whose case is reported, was one of the 594 patients managed at the Cayenne Oncology Unit in French Guiana between
January 2010 and December 2012. Mrs. X’s trusted representative in confidential matters was her 21-year- old sister, who gave oral permission
for anonymized data relating to the case to be published. The search for relevant references was guided by the nature of the data and discussion
between authors.

Findings: Mrs. X’s clinical presentation was typical for cancer of the cervix. Initial treatment was with curative intent led to incomplete resection. However, disease progression quickly made her case one of palliative management, and this raised many social, economic, family and cultural issues.
These included illegal immigration, poverty, lack of structured family support, and aspects of indigenous cultural practice. The first three aspects
were effectively managed by social workers. Cultural aspects, however, were not well understood. The objective was that the patient should die in
her home surroundings and receive appropriate cultural death rites. This Native American patient was thought to belong to a cultural group whose
death rites have disappeared. In fact, she belonged to a different group that had also lost its cultural identity.

Conclusions: Knowing patients’ medical history is essential to planning effective palliative care. But it is also important to understand as fully as possible their social, familial and cultural circumstances. In relation to a patient’s culture, we must not rely on general assumptions but should seek to understand the specific circumstances relevant to a particular individual.

French Guiana is a French Overseas Department with the
same health care system as European France, but the population
and its culture are fundamentally different. The territory, located
on the north-eastern coast of South America, has an area of 84,000
km2, 95% of which is equatorial forest. The official population is
229,000, but there are approximately 40,000 illegal immigrants.
The majority of inhabitants live close to the Atlantic coast which
is the site of the three major cities: Cayenne (population 127,000),
Saint-Laurent du Maroni (33,700) and Kourou (25,900). The
remainder of the population lives in small village territories of
2,000 to 8,000 inhabitants, with sometimes only a few dozen
living in the village itself. Figure 1 shows a map of the territory.
The GDP per capita is 9,837 Euros (30% of the 32,921 euro per
capita GDP in European France).

The official rate of unemployment is high: 20% of the workingage
population overall and 31% among people aged less than
thirty. Similar proportions may be unemployed but not counted
in the statistics. Fifty-three percent of those aged under 15 do
not have high-school diplomas. The political, administrative and
health care structures are the same as in European France.

The Centre Hospitalier Andrée-Rosemon in Cayenneis a
university hospital within the framework of the University of
French West Indies - Guiana. The most developed and active
services relate to obstetrics and pediatrics, tropical medicine, and
to emergency medicine and intensive care.

Eighteen health care centers linked to the Cayenne hospital
are spread around the territory.

The population of French Guiana is expanding, with an
annual growth rate of 3.9% and a projected population for
2030 of 424,000. The diverse population is made up of 40%
Guyanese and French West Indies creoles, 10% French Caucasian
Europeans, Haitians (10%), Brazilians (10%), and Surinamese
(10%). There are small numbers of Chinese and Guyanese. There
are also two distinct indigenous groups: Native Amerindians and
Bushinengue, also called “maroons”, comprise 8,000 and 45,000
people respectively. There are major cultural differences between
the different groups.

This case report describes a patient, Mrs. X, with a typical
cancer presentation but one accompanied by the many social,
economic, familial and cultural issues that are typically
encountered in French Guiana. Such problems may also occur in
the management of cancer patients in other low-income countries
and in immigrant populations in high income countries.

Patient and Methods

Mrs. X was one of 594 patient scared for at the Cayenne
Oncology Unit between January 2010 and December 2012 [1].
The series of 594 cases was the subject of a thesis for an MD
degree (LB), a study reviewed and approved by the University
of French Guiana and West Indies Medical School Institutional
Review Board. Mrs. X appointed her 21-year-old sister, who lived
in Cayenne, as her trusted representative in confidential matters.
Mrs. X’s sister gave oral consent to publication of anonymized
data relating to the case. A retrospective study of the clinical
files was conducted by those involved in her management. This
included the gynecology department, the medical oncology day
hospital, the supportive care board, and the Mobile Palliative Care
Team (MPCT).

The search for relevant references on pubmed™ and Google™
was guided by the nature of the data and discussion between
authors.

Patient’s Medical History

Mrs. X was aged 38 when she presented in May 2010 with a
complaint of genital bleeding for a couple of weeks. Gynecological
exam discovered a tumor of the cervix and biopsy confirmed
an infiltrating poorly differentiated carcinoma. The stage was
T2bN1M0 clinically and on whole-body CT scan. Mrs. X had no
significant comorbidities such as diabetes, hypertension or
impaired renal function.

She was treated in a French West Indies hospital and received
radio-chemotherapy: 45 Gy over 5 weeks, 9 Gy/week in 5 fractions
of 1.8 Gy with Cisplatin 40 mg/m2/week. A 15 Gy brachy therapy
boost was technically impossible due to stricture of the cervix,
but a boost of 20 Gy was given by external beam radiotherapy.
In February 2011, two months after this protocol had ended, CT
scan revealed the persistence of a 20 mm cervical tumor and an
extension to the right adnexa.

Salvage surgery was decided on and in March 2011 the
patient underwent an enlarged colpo-hysterectomy (Piver II) and
incomplete resection of a 50 mm residual right iliac lymph node.
No further lymph node dissection was possible due to sclerosis.
No peritoneal abnormality was seen. The pathological report
showed a tumor invading the cervix and the uterine isthmus of
45 mm diameter; invasion of the whole isthmus endometrium;
lymphatic and vascular embolisms; and extension to the right
parameter. There was no invasion of the myometrium or of the
vagina. Peritoneal cytology was normal. The residual lymph node
was sclerotic and did not contain tumor cells. On microscopy,
the tumor was poorly differentiated epidermoid infiltrating
carcinoma.

One month later Mrs. X had recovered, but she complained
of cystitis and diarrhea. As the exeresis was complete (R0), the
patient was followed every 3 months with gynecological exam
and CT scan. Follow-up gynecological exam demonstrated a local
relapse and CT a relapse in the pelvis, with spread in the lombo
aortic and mediastinal lymph nodes. Her creatinine clearance
was 71 ml/min, and her performance status (PS) 0.

Mrs. X was hospitalized at the Cayenne Hospital from
November 11th 2011 until January 24th 2012 and received
palliative chemotherapy: two cycles of Cisplatin 50 mg/m2 day
1 and Topotecan 0.75 mg/m2/d, days 1, 2, 3 (day 1 = day 21).
Evaluation showed progressive disease; creatinine clearance was
44 ml/min; PS was 2; and there was bilateral ureteral obstruction.
A decision was made to switch to Paclitaxel 80 mg/m2/d on days
1, 8, 15 and Carboplatin AUC 4, but the patient received only
days 1 and 8 of the first cycle. An attempt to place JJ tubes was
unsuccessful due to bladder involvement. Nephrostomy was
not reasonable in this setting. Due to rapid disease progression,
poor tolerance of chemotherapy and worsening performance
status, it was decided that that patient should receive palliative
management.

The gynecology team contacted the Mobile Palliative Care
Team (MPCT) consisting of a board-certified palliative care
physician, a trained registered nurse for palliative care and a
psychologist. The social worker in charge of the patient was from
the medical oncology outpatient clinic. The patient was visited by
her sister. The medical team was concerned by the medico-social
and psychological situation of the patient and family.

On November 28th 2011 the clinical exam revealed anorexia,
no weight loss, and grade 5/10 pain -- despite oral morphine –
which was localized in the pelvis and increased by urination and
going to stool. The insufficient effect of morphine was partly due
to poor implementation by the nursing team, and partly tomrs.
X’s reluctance to receive this drug. Significant anemia was caused
by hematuria. Mrs. X complained of urinary leakage, but refused
urinary protection (a urethral tube was not tolerated). Oral food
intake was limited, despite the absence of oral mucositis. She
received oral nutritional supplements. There was constipation
secondary to the morphine but also probably in relation to
invasion of the pelvis. Mobility was limited to a perimeter of
about four meters; Mrs. X attained a sitting position only very
briefly, and her usual position was lying in bed. Thus the PS was
3. There were no cutaneous complications.

Social and cultural context

Mrs. X spoke French and Brazilian, but she was assumed to
be a Palikur, one of the Native American groups living in the east
part of the French Guiana and in the Amapa state in Brazil. She
was completely informed of her disease at initial diagnosis, of all
treatments following progression, and of the palliative objective
of chemotherapy. She was also informed of and shared the
decision to limit subsequent management to palliative care. She
was aware of the fact that progressive renal insufficiency was lifethreatening,
and she spontaneously raised the subject of dying in
her village and her home (or “where she was living”). She did not
mention belonging to a particular church.

The difficult family context weighed on the patient’s mood.
She was distressed by the emotional and cultural isolation which
resulted from being hospitalized. Her aim was to find her son and
her family, particularly her husband in St Georges-de-l’Oyapock,
and her 10-year-old daughter, currently with a foster family
in Cayenne. Her objective was to reunite the siblings. She was
supported during hospitalization by her sister who maintained
the connection with her family: her husband, her 10-year-old
daughter and the foster family in Cayenne. Her husband and
family supported her return home. The various health care
providers committed themselves to fulfilling Mrs. X’s request to
return home to die.

Located on the eastern border of French Guiana, on the banks
of the Oyapock River, Saint-Georges is 189 km from Cayenne
[Figure 1]. It has a health care center with a medical doctor and a
nurse and three observation beds for a maximum duration of 72
hours. Transfusions cannot be carried out.

The social worker assessed the patient’s administrative status,
her financial situation in relation to medical care and her social
conditions. Mrs. X lived in a traditional Native Amerindian wooden
house on stilts at the entrance of Saint-Georges in a community
village [Figure 2]. The dwellings did not have electricity, water
was available only from the well, and the toilets were shared and
located at the bottom of the garden. The equipment of the house
was rudimentary, consisting of a stove and hammocks. The rainy
season makes travel difficult. The family had few resources and
would not have been able to assume the cost of repatriating the
body to Saint-Georges if Mrs. X were to die in Cayenne.

Figure 1: Map of French Guiana and the commune of Saint-Georges de
l’Oyapock (French Guiana)
(From Wikimedia Commons, the free media repository- 2003)

Figure 2: Traditional Native Amerindian wooden house on stilts at the
entrance of Saint-Georges (Photograph by the first author)

Results

A telephone conference on January 9th 2012 between the
Saint-Georges health care center doctor and nurse, the MPCT, and
the social worker at the Cayenne Hospital explored the family’s
circumstances and the facilities available. Neither the health
care center nor the medical equipment supplier in Cayenne had
a pneumatic medical bed; but a bed could be lent by the Saint-
Georges center. Material needed for palliative care could be
delivered the week following Mrs. X’s return home.

The multidisciplinary team meeting of January 10th 2012
(Oncology Day Hospital, MPCT) established that the patient would
benefit from a blood transfusion before departure with target
hemoglobin of 12 g/dl. It was accepted that the transfusion could
not be repeated regardless of the deteriorating general condition
of the patient. Mrs. X was informed of the medical conditions of
the return home, but she continued to make that her objective.

Discharge was scheduled for January 25th 2012. On January
24th, the patient’s condition was severely impaired, but the need
for discharge was confirmed with the family and the health care
center. A laissez-passer and a medical certificate were issued so
that Mrs. X could return home even if she died on the journey.

The patient arrived home on the evening of January 24th
2012 and died during the following night. Mrs. X’s body was kept
for 48 hours free of charge by the village town hall so that her
husband could make a coffin and arrange burial. Nevertheless the
grave is now unmarked.

Subsequently, we investigated the socio-cultural situation of
the patient in greater depth. Mrs. X was born in aldeiacupirion
the Cupiri River in the Amapa state of Brazil. She was a Karipuna,
one of the Native American groups living in Amapa state but had
immigrated to Saint-Georges de l’Oyapock 20 years earlier. She
had a husband who was also a Karipuna. They lived from fishing
and hunting but she stayed at home. When she became ill, their
relationship became difficult with her husband prone to violence
and alcoholism.

Mrs. X and her husband had four children. Two adult daughters
never contacted their mother. A 7 year old son lived with his
father in Saint-Georges, after several attempts to place him in care
had failed. A 10-year-old girl had been placed in a foster family in
Cayenne three years before. Several attempts to permit the young
daughter to come in Mrs. X 21-year-old sister’s home in Cayenne
to see her mother were possible with the help of the foster family:
this allowed informing and supporting this young girl. Thus Mrs.
X’s sole source of help washer own sister living in Cayenne who
was her “person of confidence” and maintained the link with her
husband and family in Saint-Georges.

Mrs. X had a Brazilian passport which allowed her to travel to
the French West Indies to receive radiotherapy in 2010, but she
was still an illegal immigrant. She was eligible only for Emergency
Medical Help (AME) [2].

We had assumed that her origin was Palikur but in fact it
was Karipuna. This was the reason why when arriving in Saint-
Georges there were no specific Palikur death rituals. At the time,
the medical team had thought it was important for the patient to
die and be buried according to the Palikur death rites, as would
be the case for a member of larger and more familiar Native
American groups such as the Ka’lina.

Discussion

This patient, born in Brazil, suffered from cervical cancer.
From 2003 to 2009, the overall cancer incidence rate among
men and women in French Guiana was 30% lower than the
standardized rate in European France, the difference being
statistically significant [3].

However, the age-standardized incidence of cervical cancer in
French Guiana was four times higher than in european france and
the mortality rate 5.5 times higher [4]. Despite a higher GDP per
capita, the age-standardized incidence rate in French Guiana is
close to those in the neighboring countries of Brazil and Surinam.

Because of the absence of screening for cervix cancer, women
living in remote areas are diagnosed later and are more frequently
already symptomatic that those in more easily accessible parts of
the country. The stage at diagnosis was the major factor influencing
Mrs. X’s prognosis. More generally, access to care for migrants
is challenging and poor access sustains health inequalities. In
French Guiana, early detection and prevention programs are
crucial for increasing cancer survival, notably for foreign-born
patients. Late diagnosis, advanced stage at diagnosis, difficulties
in accessing treatment facilities, and absence of prevention and
screening are common problems in tropical countries which
generally are of low and middle-low income [5-9]. Surprisingly
this is also the case for a large proportion of the population in
French Guiana [10].

The patient described suffered cumulatively from many of
the problems which could occur: she was an illegal immigrant,
had no health insurance coverage and no financial resources,
and she was from a culture with a small number of members
and practices different from those of the larger groups in the
population.

In French Guiana, the last census in 2014 estimated
the population at 252,338 inhabitants, of whom 40% were
immigrants. Three-quarters of the immigrants were born in Haiti,
Brazil and Surinam. Clandestine miners are estimated to amount
to 8,000 people and illegal immigrants to 10-20,000 [11]. This is
a worldwide problem: in Africa, the number of internal migrants
was estimated at 70 million people in 2009. An additional round
1.5 million had migrated to Europe [12]..

This patient had lived in French Guiana for 20 years. Generally,
most patients are covered by one or other of the various national
health insurance systems. In French Guiana 60% of people are
covered by the national health insurance, 28% by universal
social insurance (CMU), and 12% by the emergency Medical Help
(AME).

Illegal immigrants have no health insurance coverage,
nevertheless in cases of severe medical emergency, social
services can help the patient by applying for a residence permit
for health care and Emergency Medical Help (AME) [2,13].
To obtain this permit, the requirements are: copy of proof of
identity with photo (passport, identity card, birth certificate with
photo), one proof of residence dating less than three months old,
identity photographs, envelopes stamped at the current rate,
proof of prolonged residence in France, proof that the medical
file has been deposited with the Regional Health Agency (ARS):
joint declaration on honor and all documents establishing the
veracity and duration of the community of life. Meeting these
administrative requirements is extremely time consuming and
necessitates the co-operation of multiple players including the
police, social security, and social services.

The Palikur live in the eastern part of French Guiana, having
originated in north-eastern Brazil [14].The population is 1600
individuals. The Palikur language belongs to the Arawak group
and 50% of the population still speaks it [15]. Their villages are
located mainly next to the Oyapock River [16]. The Palikur have a
patrilineal and exogamous clan structure and practice slash-andburn
cultivation producing principally couak and manioc beer
(kashiri) [17]. They also hunt and fish. Craftsmanship is a vivid
cultural tradition.

In French Guiana they live close to Creole villages. During
the 1960s, the North American Summer Institute of Linguistics
(SIL) penetrated Palikur society in Brazil. They translated the
Bible into Palikur and converted a large part of the population
to Evangelical Christianity. Christian Palikur is told to reject
traditional rituals such as feasting (dancing, kashiri drinking and
bark smoking).

Until recently, the Palikur of the Oyapock maintained clan
cemeteries. The bones were prepared by putrefaction in a first
burial and then deposited in a second urn after a period of
conservation by the family of the deceased [18]. When Palikur
die in foreign lands, there is an obligation to repatriate at least a
part of the deceased’s body to the native territory. This practice
testifies to the absence of rupture with the dead [16].Although
such funeral practices have declined, holding the funeral rites
within the dead person’s territory still has great importance This
justified the need to make arrangements so that Mrs. X could die
in her village. However, it turned out that this patient did not in
fact belong to the Palikur cultural group.

Her birth place -- aldeiacupiri on the Cupiri River, near
Manga – should have attracted our attention, since this area is
historically the geographical origin of Karipuna. The history of
the Karipuna is linked to the delimitation of the Franco-Brazilian
border on the Oyapock River in 1900 and the history of what
was called the “Contested Territory”, now, the Brazilian state of
Amapa. This territory, far from the economic centers of Brazil
and poorly accessible from Belem, has long represented a refuge
for Native Americans displaced by Portuguese pressure, for the
maroons from Brazil and French Guiana, and later for the poor
populations of the lower Amazon [19]. This territory has always
had a special relationship with French Guiana. The Karipuna of
today were formed by the integration and cohabitation of these
populations from Amazonia, Pará or Guiana with each other and
with the indigenous peoples and has become – in a little more
than a century – a distinct culture [16]. Those who were still
known at the beginning of the 20th century as “Brazilians of the
Cupiri” (the name of the river where they were settled), only 150
people - became “Indians” for the Brazilian administration in the
1930s. The Brazilian policy was the assimilation with Portuguese
teaching, nationalism and acculturation.

The Karipuna population, approximately 2,400 people in
2010, is now established in three main villages on the Cupiri
River- Manga, Santa Isabel, Espirito Santo- and in some other
small villages on the river (such as Aldeia Cupiri). The natives of
the former “Contested Territory” tried to move to French Guiana
where they would benefit from the privileges of being on French
territory. However, although the population (especially given its
Native American antecedents) was essentially “cross border”, the
administrative rules applied to limit mobility now give them the
status of “migrants”[19].

Conclusion

The initial management of this patient with cervix cancer
was based on western standards and was according to evidencebased-
medicine. Mrs. X was treated within the French Health care
system. However the disease progressed and the patient entered
a phase of purely palliative treatment, which corresponded to
current guidelines [20]. Difficulties were encountered due to the
patient’s status as an illegal immigrant, her poverty, absence of
supportive family structure, and non-European culture. The three
first aspects were dealt with by professional social workers and,
although this was time consuming, it could deal with in a hospital.
The cultural aspects, in contrast, required expert understanding
of the cultures concerned and in-depth knowledge of the patient.

This patient was assumed to be a Palikur. As this population
is small, the health professionals thought that their death rites
were similar to those of the larger groups of Native Americans
in French Guiana, such as the Ka’lina or Wayana. In fact they
had made a double mistake. The first was in being unaware that
nowadays the Palikur no longer practice ancestral rites. The
second was in not realizing that the patient was not a Palikur but
actually a Karipuna. None of the health professionals were aware
of this population: only a retrospective bibliographic research
allowed full understanding of Mrs. X’s true situation.

Issues similar to those addressed in this case report may
arise with cancer patients in other low income countries and
with immigrant patients in western countries. It is important to
fully understand the medical history but also the social, familial
and cultural characteristics of patients. If the cultural origin
of patients is to be considered, we must not confine ourselves
to general assumptions but should attempt to understand the
precise circumstances of the individual.

The authors would like to thank Gérard Collomb, Michel
Launey, Lux Vidal and Alexis Tiouka for their inputs to allow
writing of this manuscript.

Conflict of Interest

None to Disclose

Ethical Approval

The entire 594 patient study was the subject of a thesis
for an MD degree (LB), and it was reviewed and approved by
the University of French Guiana and West Indies Medical School
Institutional Review Board1.Her sister living in Cayenne who was
her “person of confidence” gave oral consent to publication of her
sister’s story if anonymized.